When even the predictable becomes unpredictable

November 23, 2011

I have left the house twice in the last four days.  Well, that’s if you don’t don’t a trip to the basement of my apartment building.  Trust me, that wasn’t so exciting.

As I said before, I haven’t been feeling right over the past few days.  I noticed it early, and I did the right thing by staying in the house and resting.  That seemed to work, so yesterday I went to the grocery store.  This was a small trip.  I drove my car, I parked close, and I know the store well, so I just got the things I needed and then left; I wasn’t wandering around.  Still, I knew immediately that it was too much.  I stayed in last night and watched a movie.  I didn’t exert myself, or even open up the computer to write.  Still, I woke up this morning feeling off again.

This happens sometimes.  The timing tends to be unpredictable, but at least the treatment is predictable.  Or at least, it was.  Every other time this has happened, by the third or fourth day (today) I would either be really sick or completely better.  I don’t know why it’s dragging on this time.  I guess it just goes to show that we can do our best to take care of ourselves, but even the predictable can surprise us.

I’m glad that I’m not working now, because it means that I didn’t try to go to work like I normally would.  Instead, I turned off my alarm and slept late, which definitely helped.  I cancelled my plans for today (and I had been looking forward to them!) and I rested.  I have no doubt that I’d be doing much worse if I was pushing myself.

The big question mark is tomorrow.  I’m not hosting Thanksgiving, but I am supposed to provide the only veggies on the table, so I hope I feel up to cooking them.  Besides, if I don’t cook, what will I do with the 4 pounds of brussels sprouts in my fridge?  As hard as it is, especially for a control freak like me, I know I just have to relax and rest tonight, and wait to see what tomorrow brings.  If I can do it, that’s great.  If not, so be it.  We all have our limits and these are mine.  How do you handle yours?

In the meantime, I’m getting really sick of watching tv.  And this is coming from a self-described couch potato.  I really need to get out of the house.  Hopefully soon…..

 

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Truly *understanding* chronic illness

November 19, 2011

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

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Where’s the predictability?

November 14, 2011

Life is unpredictable.  I know that.  And to be honest, I tend to handle change fairly well.  Still, too much change at once is difficult.

Autoimmune diseases are tough to handle, but being able to predict certain things about the day can make a huge difference.  Knowing how active I’ll need to be, when and what I’ll eat, and when I’ll be able to rest all make it a whole lot easier.

While I’m not working, I’m making an effort to set plans in advance so that I have reasons to get out of the house and see people.  This is good for me.  I need and want to spend more time with family and friends.  But for some reason, three different people needed to reschedule our times this week, two others needed to set something up last-minute, and I heard from all of them today!  To them, this isn’t a big deal.  Move a lunch, change a date, switch things around…. easy, right?  But this is making me nervous.  It’s a lot to juggle.  I need to make sure I don’t do too many things on the same day, so I need to find a way to do everything and see everyone in a way that makes me happy and not too worn out.

I don’t know yet how I’ll work all of this out, but at least I know one thing for sure: my health comes first.  I’ll do my best to work out everything else, but I will make sure that I feel good at the end of the week.

 

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Being two people

November 13, 2011

Sometimes the dichotomy amazes me.

I spent the day yesterday indoors.  I read email, watched tv, and did a bunch of other things that at the moment I can’t remember.  I was very aware of the pain I was in.  I was generally unproductive.  I got no exercise (aside from some minor physical therapy.)  It was a gorgeous fall day.  I knew I should have gone outside, but I just didn’t want to.  I suppose I’ve been a bit depressed lately.

Then last night I went to a friend’s party.  I’d been looking forward to this for a long time.  I met some great people and had a lot of fun.  I forgot about the pain.  I wasn’t depressed.  I had a wonderful time and felt great and, aside from avoiding certain foods and being careful how I distributed my weight as I stood, I completely forgot that I had any health issues.  It’s was great.

It was like I was two different people yesterday.  I know that I need to make more of an effort to be that second person.  For starters, I will leave the house before noon every day.  I might just take a walk around the block, but I will get fresh air every morning by leaving my apartment.  I will make more plans with people so that I leave the house.  I will actually do the things on my to do list each day, instead of moving them to the next day (or week.)

That won’t fix everything, but it’s a start.